Elli, 19 and a freshman pre-med student at Ohio State, was a sophomore in high school when she began experiencing unexplained episodes of light-headedness. Repeated doctor visits left her without answers. One doctor even told her it was just “hormonal teenager” issues. But in her gut she always believed something was wrong.
When she was hired as a student worker at The Ohio State University Wexner Medical Center and was serendipitously placed in the surgical waiting room at Ohio State’s James Cancer Hospital and Solove Research Institute, she got to know head and neck oncologic surgeon Matthew Old, MD. After describing her symptoms and frustrations, Dr. Old agreed to see her in the clinic where he diagnosed her with a rare head and neck tumor called a paraganglioma.
Paragangliomas are rare – and the form that Elli has only occurs in just 1 of every 2 million people. The majority of these tumors are benign (97 percent) but they are considered very high risk because they often occur in a critical area of the head where nerves that control important bodily functions like speaking, swallowing and hearing reside.
17 Hour Surgery, Long Recovery
On April 16, 2015, Elli underwent a 17-hour surgery involving three surgeons and dozens of medical support staff to remove the softball sized tumor from the base of her skull. It had already resulted in partial hearing loss and paralysis of her tongue/vocal cord on the right side. Her treatment team estimates the tumor had been slowly growing for eight years prior to her diagnosis. Left untreated, it could have ultimately caused her to have a stroke or completely lose her ability to hear, speak and/or swallow.
She spent one night in the ICU, four in The James inpatient and six at the Dodd Rehabilitation Hospital – followed by a second two-hour surgery and one additional night at The James.
Prior to surgery, doctors prepared Elli and her family for a long road to recovery – up to 18 months, depending on how the tumor’s removal would impact her ability to speak, swallow and hear post-surgery. But just six weeks post-op, Elli returned to work at The James where she was greeted with a surprise celebration from the more than 40 surgery staff who took part in her care.
A highly orchestrated sequence of events, surgery to remove Elli’s tumor started with opening her neck to get access to the tumor. Head and neck surgeon Dr. Matthew Old separated critical nerves and important structures in an effort to dislodge the carotid artery from the tumor. Neurosurgeon Daniel Prevedello, MD, was on standby in order to gain deeper access into the base of the skull to access the tumor. Oliver Adunka, MD, addressed the tumor involvement in her ear canal. Although his services were fortunately not needed, vascular surgeon Michael Go, MD, was on standby to create a vein graft from a vessel in Elli’s leg to bypass the carotid and restore blood flow to her brain and upper body should the carotid artery have needed to be removed entirely.
Looking Ahead with Optimism
Noting that she feels “amazing and grateful,” Elli says she draws strength from her two younger brothers, who both have their own health challenges.
Elli is not 100 percent “better” — she continues therapy to learn how to modify her eating to accommodate certain foods, to strengthen her voice and to address some loss of feeling in one of her feet. But she has answers. Her hearing is intact. Her facial nerve is intact. She can speak. She can swallow. And she is even more motivated to pursue her goal of becoming a physician.
In June, she traveled the seven-hour car ride car to Ithaca, New York, with her family and, for the first time in six years, experienced no motion sickness. She was even able to enjoy sailing, so much so that her family made the trip again in July. Now she is set to move into a house off-campus with nine of her best girl friends in preparation for the fall semester at Ohio State.
Elli blogs about her experience, and in a recent post she reflected: “Day by day through my troubles and improvements, I never lose sight of my blessings. I am lucky. I am happy. I am healthy.”